Diagnosis

Diagnosis Process for ASD with Dr. Lindsey Sterling

Getting a Diagnosis of Autism

Receiving an autism diagnosis can be a meaningful step toward better understanding yourself or your child. While the process may feel overwhelming at first, a diagnosis can open the door to greater self-awareness, access to resources, and appropriate support.

Why a Diagnosis Matters

A formal diagnosis helps identify an individual’s strengths, challenges, and unique ways of experiencing the world. It provides clarity, can reduce uncertainty, and allows for tailored educational, workplace, or therapeutic accommodations. For adults, it often offers validation and helps explain lifelong patterns in communication, sensory experiences, or social interactions.

Getting a diagnosis is also an important step for receiving government benefits or qualifying for educational services.

To qualify for Social Security Disability Insurance (SSDI), the individual’s disability must have been discovered before age 22. Having a formal diagnosis can help in apply for this benefit.
To qualify for Regional Center services, the disability must originate before age 18.
Obtaining a diagnosis can be expensive. Some sources of funding include your private health insurance or some government agencies, such as Regional Center. Contact the medical offices first to find out if they take insurance.

The Diagnostic Process

Diagnosis of ASD can be done by a psychologist or neurologist. A list of organizations that can perform a psychological evaluation is provided below.

Diagnosis typically involves several steps:

Initial Screening: A primary care provider, psychologist, or educator may recommend an autism evaluation if there are concerns about communication, social skills, or behavior.
Comprehensive Evaluation: A qualified professional—such as a developmental psychologist, psychiatrist, or neurologist—conducts interviews, observations, and standardized assessments.
Review of Developmental History: Family members or caregivers may be asked about early development, learning, and social patterns.
Diagnostic Criteria: The evaluation is based on guidelines from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR), which focuses on social communication differences and restricted or repetitive behaviors.

Ways to Pay / Reduce Costs

Getting a diagnosis can be expensive. Here are some ideas of ways to pay for a diagnosis.

Health Insurance
- Many private insurance plans cover autism diagnostic evaluations at least partially. It depends on whether your plan is “fully-insured” vs. “self-funded,” state mandates, and what diagnostic tools are being used. (Apricott)
- There may be out-of-pocket costs like deductibles, copays, or coinsurance. Make sure to ask your insurance company first: what exactly is covered, whether prior authorization is needed, whether the provider is “in-network.” (Double Care ABA)
Medicaid / Public Assistance Programs
- If you or the person being diagnosed is eligible for Medicaid, many states will cover, or partially cover, diagnostic services. (Arizona Autism United)
- There may be special state programs or waivers that provide free or low-cost evaluations through public health departments, regional centers, or disability services. (Arizona Autism United)
Scholarships / Grants / Non-profits
- Nonprofit organizations often help with the cost of diagnosis: e.g. KNOWAutism Foundation offers Autism Diagnostic Assistance Scholarships for families in certain areas. (Jotform)
- There are grants that can cover either full or partial diagnostic evaluations. (Autism Foundation)
Sliding Scale Clinics / University Clinics
- Some university psychology departments, training clinics, or teaching hospitals offer autism evaluations at reduced rates, often based on income. Because these are also learning centers, cost is lower. (Apricott)
- Sometimes these places also have waitlists but are more affordable. (Apricott)
Out-of-pocket / Self-pay
- If insurance or public assistance doesn’t cover all of it, sometimes people pay the rest out-of-pocket. Knowing ahead what the diagnostic provider charges helps—you can get estimates. (Grateful Care ABA)
- Some providers give payment plans. It never hurts to ask.
Using Flexible Spending Accounts (FSA) or Health Savings Accounts (HSA)
- If you have an FSA or HSA, you may be able to use it to cover diagnostic services, especially if the provider gives you documentation (superbills, etc.). (Adult Autism Assess)
State Laws / Mandates
- In states with laws requiring insurance to cover autism diagnosis and treatment (or parts of it), these laws may help ensure that insurance must cover certain assessments. (Apricott)

Things to Check / Ask About

Does your insurance plan cover diagnostic evaluations (not just treatment)?
Is the provider in-network or do they accept your insurance?
What will your out-of-pocket cost be (deductible, copay, coinsurance)?
Are there providers in your area offering free or sliding scale services?
Are there organizations in your region offering grants or diagnostic assistance?
If you’re an adult, check if your state or region has resources specific to adult autism diagnosis (these are sometimes more limited).

For Children

Early diagnosis can help children access support such as speech therapy, occupational therapy, or social skills programs. Pediatricians often use screening tools like the M-CHAT (Modified Checklist for Autism in Toddlers) as a first step.

For Adults

Adults who suspect they may be autistic can seek an evaluation through a psychologist, psychiatrist, or neuropsychologist familiar with autism in adulthood. Some people may also pursue a self-identification or informal recognition when access to formal testing is limited.

Absolutely — here’s a clear explanation of the different levels of autism diagnosis as they are currently defined.

Understanding Autism Diagnostic Levels

In 2013, the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition) replaced older terms like Asperger’s syndrome, Pervasive Developmental Disorder (PDD), and Autistic Disorder with a single diagnosis:
Autism Spectrum Disorder (ASD).

The term spectrum reflects the wide range of characteristics, abilities, and support needs among autistic individuals.

To help clinicians describe how much daily support a person might need, the DSM-5 introduced three levels of support rather than “types.”
These are sometimes (informally) referred to as “Type 1, 2, or 3,” but the correct terminology is Level 1, Level 2, or Level 3 ASD.

Level 1: Requiring Support

Description: Individuals can communicate and manage many aspects of daily life independently but may struggle in social situations or with changes in routine.
Social Communication: May have difficulty initiating or maintaining conversations, understanding social cues, or making friends.
Behavior / Flexibility: May show inflexibility with routines or rules and find unexpected change stressful.
Example: Someone who can live independently, attend school or work, but benefits from coaching, structure, or accommodations (e.g., quiet workspace, clear communication).
Previously associated with: Asperger’s syndrome or high-functioning autism (though these terms are no longer used clinically).

Level 2: Requiring Substantial Support

Description: Individuals need more consistent and noticeable support across settings.
Social Communication: Clear difficulties with verbal and nonverbal communication; social interactions may be limited or atypical even with support.
Behavior / Flexibility: More apparent repetitive behaviors or resistance to change; may need structured routines to manage daily life.
Example: Someone who can communicate basic needs but struggles with back-and-forth conversation, may require assistance with transitions, and benefits from specialized education or workplace adjustments.

Level 3: Requiring Very Substantial Support

Description: Individuals need significant help with daily living skills and communication.
Social Communication: Limited or minimal verbal language; often relies on assistive communication methods (e.g., AAC devices, picture systems).
Behavior / Flexibility: Strongly restricted or repetitive behaviors; significant distress when routines change.
Example: Someone who requires full-time support in school, work, or residential settings, and structured care for safety and communication needs.

Important Notes

Levels are not fixed: Support needs can change over time or vary by environment. Someone may require Level 2 support in school but Level 1 support in daily life.
Not about intelligence: These levels reflect support needs, not IQ or ability. Many autistic people—across all levels—have strong skills and deep interests.
Labels aren’t the whole story: Every autistic person is unique. The levels are meant as clinical tools, not identities.

After the Diagnosis

Receiving a diagnosis is just the beginning. Many people find it helpful to:

Learn more about autism and neurodiversity.
Connect with support groups and autistic communities.
Explore therapies or workplace accommodations that foster success.
Share the diagnosis selectively, when it feels right, to improve understanding and inclusion.

Moving Forward

Getting an autism diagnosis is not about labeling—it’s about understanding. It helps individuals and families move forward with greater compassion, self-knowledge, and tools for thriving.